Thursday, June 28, 2012

“I don't think of all the misery but of the beauty that still remains,” Anne Frank wrote in The Diary of a Young Girl. If you wondered if there was a happy person any where today, rest assured that there were at least two. Eli had a great day today. I always feel the need to asterisk any statements because I know how quickly I can be proven wrong. But here at the 11th hour, according to all developments and information that I have at this moment, I’m going to consider today in the books, and mark it great day. There may not be many, so we want to make a big deal about the ones that do come along. Anything that happens beyond this writing will be attributed to tomorrow. So, if you’ve taken your sharpie and blacked out June 28th on your calendar, take a big red marker and draw a heart around it because each day has something good somewhere happening. And I’m sharing a picture of at least one of those things and that is Eli walking out of St. Jude in the early evening sunlight. He would not stop for a picture. He was beyond ready to leave. His chemistries today were all within normal range, but his heart rate is still not stable. It does at least go up now, but it is pretty erratic. They believe that will settle out as all the electrolytes line up. His liver was showing some high numbers that they will watch. But, overall he looked great. He hasn’t thrown up in a while or had diarrhea. We walked ½ a mile today. I learned that 11 laps around the 2nd floor of the Chili’s Care Center at St. Jude is 1 mile. He ate some today, but his mood is kind of mellow. We saw the neurosurgeon and he said the fluid was definitely new and not left over from his last problem with overshunting. They have dialed the valve back to the highest setting which means that it drains the least amount that valve will allow. He will scan him again in a week. I’m not sure where we go from there. It sounds like removing it is not really an option or if it is, it is a major surgery. It sounds like there is another valve choice that has an “off setting”, but Dr. Klimo said nothing further about that. He dropped his head in sadness when I told him why we even knew there was a problem. Eli had no clinical symptoms. The other doctors were kind of brainstorming with me about Eli’s heart rate issue and I said, “Well, to be honest, we are due a shunt problem.” So, they gave the reason why that could be the source of it and decided to do a CAT scan and there it was. However, they have since ruled that out as a reason for the low heart rate now that manipulating the electrolytes has affected it. The cultures have not grown anything, so I think they are chalking the fever up to chemo. Which I’m not surprised because Vic is very diligent with sterilization during the process of caring for Eli’s lines. In other events today, Eli needed a platelet transfusion. They are keeping him at a higher level than is required by the protocol because of his white blood cell count in the beginning and Klimo has also requested it. So, I don’t know if you remember, but Eli had a horrible allergic reaction to the transfusion. He couldn’t breathe, he swelled up, rashed up, so they took the first guinea pig step back to see what would happen. When transfusing platelets, which is a blood product, the patient doesn’t just get platelets, he gets all the other cells that come with blood products. So, they stripped it down of that extra fluid, so that he was only getting platelets. So, he gets the correct number of platelets, but not all the extra stuff. They also premedicated him with Benadryl and spread the transfusion out over a longer period of time. Patients can sometimes be allergic to the “extra stuff” and not the platelets or sometimes they are allergic to certain donors and might not be to the next one. Whatever the reason, he showed no allergic reaction, which is good news for several reasons, but one reason is that the next step if he was still allergic is to wash or clean the platelets which will dilute them a bit. I think, I’ve mentioned that before, but I wanted you to see that we still had wiggle room for once. The other reason it was good news that he did not have an allergic reaction is that it allowed us to go to Target House this evening. Yay! We left the hospital with his nutritional supplement pouch, and the antibiotic that has to be done twice a day for six more days. His ANC, immune system number is dropping like a rock and we expect him to be at zero in the next couple of days. He and Vic will hunker down with no visitors at the apartment until it is back up. This way Vic can get in his work more easily than he can while running around with the other kids. I plan for us to be more diligent about that than we were last time when he ended up running a fever and was back in the hospital right after leaving. That would be devastating if it happened again with this last trip being so horrible. I would hate to put him back in with a fever just because we wanted to see him or be together. Time for that later, but for now Eli comes first and that means he is off limits. Lastly, I will have to rate LaBonheur higher on the hand soap as shampoo test. With as many places as I drag a suitcase to these days, I can’t seem to keep shampoo in it. I came home with Eli to Target House tonight and will switch with Vic tomorrow.

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